My daughter Yocheved was born with a heart murmur, which the doctors assured us was no problem and would clear up with time. In the meantime we would keep an eye on it, taking her to the cardiologist for routine exams. When she was two years old, the doctor noticed a narrowing in her aorta, the main artery of the body that supplies oxygenated blood to the circulatory system. This narrowing was actually indicative of a congenital heart defect called supravalvar aortic stenosis, or SVAS. The condition is dangerous because it can potentially reach the stage where the passageway is so constricted that blood flow is impeded. Still, the cardiologist was not overly concerned. He felt that the narrowing would taper off on its own by the time my daughter was eight or nine, and aside from monitoring the situation, no further steps would need to be taken. The day everything fell apart began typically enough. Yocheved was five years old, and I was taking her to the cardiologist for her yearly checkup, which I’d actually delayed for a while because I’d been busy. Besides, knowing that the visit was routine, I’d made the appointment at the closest clinic. The cardiologist checked my daughter and looked at me. “Why did you come here?” he asked. “We monitor common, everyday conditions and administer EKGs. This is beyond our field of expertise. We’re not equipped to deal with congenital heart disease.” He told me that I had to take my daughter to his other office in the hospital, where they had the proper diagnostic equipment. I didn’t know what he meant, but since he was one of the top pediatric cardiologists in the country, I knew I had to listen.
Panicked, we met him at his hospital office a short time later. It seemed that in the past year Yocheved’s aorta had continued to thicken, to such an extent that it was almost completely blocked. The blood flow into her heart was already severely restricted. This meant that she would require surgery within the next few months to correct it. Heart surgery is never simple for anyone, let alone a five-yearold child, but Yocheved had an additional problem; she was highly allergic to anesthesia, and a severe reaction could cause her to go into immediate cardiac arrest, G-d forbid. Although not all children with SVAS suffer from this problem, for those who do, the consequences can be deadly. In medical situations where forgoing anesthesia is not an option, doctors monitor the patient extremely carefully as it is being administered. The drugs are injected slowly, in stages, so that resuscitation can be started immediately if necessary. Not exactly a pleasant scenario for any parent to contemplate. Unfortunately, the hospitals in Israel were only just beginning to do sophisticated procedures like this.
According to Rabbi Elimelech Firer of the medical referral organization Ezra Lemarpeh, the place we needed to go was Boston. So a week before Pesach we packed our bags and flew to America on a reconnaissance mission to research our options. This wasn’t at all simple, as it turned out. Rabbi Firer had advised us to go to Boston but hadn’t told us which particular hospital or doctor we should seek out. Then there was the small detail of obtaining insurance coverage for the approximately $300,000 it costs to have open-heart surgery. It was an exceptionally tense time. Everything was still up in the air and the clock was ticking, with Yocheved in danger of going into heart failure at any moment. Baruch Hashem, we were given contact information for Rofeh International, an organization that helps very ill patients and their families obtain lifesaving medical treatment and services. They referred us to Boston Children’s Hospital and its top pediatric heart surgeon.
After meeting with us, he explained what the operation would entail; an incision would be made in the aorta and patched with a piece of tissue from another part of the body. This would enlarge the vessel, creating more space for the blood to flow through, and the patch would be made loose enough to accommodate Yocheved’s growing heart. The doctor concurred with the surgeon in Eretz Yisrael who had said the operation did not need to be done immediately and that we could wait a few months. We scheduled it for the end of August. In fact, however, they were both wrong. When Yocheved’s chest was opened up on August 26, it was discovered that the blockage in her aorta was much more advanced than originally thought. Had we waited even a little longer, her heart would have succumbed to the pressure. But even without that knowledge, it was one of the scariest moments of my life when they wheeled my daughter into the operating room. We had no idea if we would ever see her again. We didn’t know then that even scarier times were to come.Thank G-d, the surgery was successful. The doctors pronounced her as good as new, and after a short recovery period we were able to take her back to Eretz Yisrael.
Once we were home, the improvement we saw was remarkable; Yocheved had much more energy than she’d had in a long time. And she continued to do quite well, until one day around two months later. I can still picture the scene, her little five-year-old body framed in the doorway, not moving. It was Erev Shabbos and she had just come back from gan. She looked at me and said, “It doesn’t hurt.” “What doesn’t hurt?” I asked. “Nothing. It doesn’t hurt,” she repeated. But a while later she began to complain that her stomach was hurting. By then it was too late on Friday afternoon to call the doctor, and I figured that it was only a stomachache, so I let it go. But after Yocheved spent the night writhing in agony, I realized that it wasn’t just a stomachache. We needed to get her help— immediately. In the morning, I called my husband home from shul and together we ran from one doctor’s house to another, but nobody was home. We were young and panicky, and for some reason we didn’t think of calling Hatzalah.
Eventually this occurred to us, so we waited for the Arab guard to drive around and got him to place the call. (In retrospect I know we should have done it ourselves, but as I said, we weren’t thinking clearly.) Hatzalah soon arrived and we were off to the hospital. The doctors in the emergency room diagnosed Yocheved with appendicitis. We explained that before they considered doing surgery, they needed to know that she had a serious problem with anesthesia. Most doctors have never heard of this rare allergylike condition, and he refused to take us seriously. “Okay, so we’ll be careful,” he said cavalierly. We tried to explain that in Boston there had been five anesthesiologists and a whole resuscitation team in the operating room just in case anything went wrong. When we saw that this information did not seem to penetrate, we simply refused to give our permission until the doctor spoke to our daughter’s cardiologist.
Naturally, the cardiologist confirmed what we had said, so at last the surgeon believed us. He became nervous, however, because he had never operated on someone with this condition, so he decided to examine Yocheved again just to make sure that surgery was indicated. What he discovered astounded him. Yocheved did not have appendicitis at all. It was actually her heart that was in distress and causing the pain. Yocheved was suffering from an acute case of pericarditis. Apparently, since her heart had been exposed for such a long period of time during her Boston surgery, bacteria had managed to infiltrate and infect the pericardium, the membrane covering the heart. This sac was now inflamed and filled with fluid that needed to be suctioned out immediately. Time was of the essence. Despite Yocheved’s allergy to anesthesia and the surgical team’s lack of experience with such patients, the decision was made to intervene. There really was no choice Although by then it was the middle of the night in Boston, the Israeli doctors attempted to contact the medical team there.
Luckily, an intern answered and was able to locate Yocheved’s file on the computer. He immediately emailed them the protocols for performing this type of procedure. Still, the surgeon, who was the head of the department, was clearly apprehensive; he later told us that his hands were shaking. The atmosphere was heavy. No one knew what the outcome would be. I had to be very strong during this entire period, especially when I advocated for my daughter. In fact, the doctor perceived me as someone with whom he could be very frank about her chances of survival. He informed me that the mortality rate for this type of surgery was 13 percent, which is very high. And that was without Yocheved’s anesthesia issue. I must have put up such a good front previously that I think I shocked him when I burst into tears. He allowed me to compose myself in his private room.
Meanwhile, the hospital put together a team of the best surgeons and anesthesiologists, as well as a resuscitation crew in case something went awry. With great solemnity the surgery was begun. Two and a half hours later the doctor emerged. “The anesthesia went well. Your daughter is alive,” he informed us. “And the surgery?” we asked. “Well, we suspect she has pneumonia and not pericarditis, as we thought. We couldn’t find any fluid. So we just closed her up as quickly as we could.” Unfortunately, two days later the pathology report came back, confirming the original diagnosis of pericarditis. The doctors realized that they had missed the fluid, and we were back to square one. Actually, it was worse than square one because the fluid was still there, meaning that Yocheved’s life was in imminent danger. However, another operation at that point was out of the question. The surgeon felt terrible and came to her room to visit her every day. Meanwhile, the doctors had started Yocheved on a regimen of three different antibiotics, including a seven-hour IV drip three times a day.
But even they conceded that these were really futile attempts to save her life. The sac around a person’s heart is completely closed, and in Yocheved’s case this meant there was no place for the excess fluid to go. In all of medical history there had never been a case of spontaneous reabsorption of fluid. We were given to understand that it was only a matter of time before the worst happened. Yocheved was simply too frail to withstand another trip to Boston. For two months she remained trapped in the hospital, waiting for the inevitable. Then a routine checkup detected that a minute amount of the fluid around her heart had disappeared. A few days later a little more was gone. The doctors couldn’t make sense of what was happening. In fact, at first they were concerned that there was an opening through which the fluid was leaking, but there wasn’t. There was simply no explanation. Experts from other hospitals were brought in to solve this mysterious case.
In the end, Yocheved’s medical team concluded that they had inadvertently stumbled upon the right combination of drugs to treat her pericarditis non-surgically. Her doctor was positively glowing, thinking that they had achieved a great medical breakthrough. Unfortunately, his excitement was short-lived. But that’s when our nes began. My brother-in-law was getting married, and Yocheved wanted desperately to be at her uncle’s wedding. I didn’t see how we could do it given that she was tethered to an IV-drip 21 hours a day. Despite the apparent “breakthrough,” there was still a considerable amount of fluid around her heart, and she remained in grave danger. But the hospital staff really loved her and tried very hard to come up with a way to enable her to attend.
On the morning of the wedding an army of volunteers came to get Yocheved ready for the big day. They were alarmed to see that her face was bright red. She was running a high fever and looked terribly sick. The doctor took one look at her and said, “This is it. It’s over.” An emergency meeting was held to weigh the options. The team even considered doing surgery again since there was nothing to lose. But it seemed that no one was willing to put his hand to the knife. Each member of the team, without the knowledge of his colleagues, spoke to us privately and urged us to take Yocheved to Boston. The cardiologist even told us that he would get the hospital to arrange the transportation. We discussed it with Rabbi Firer, who advised us to allow Yocheved to attend the wedding while all the travel details were being worked out.
As sick as she was, she was determined to go, and she actually did perk up a bit as soon as her dress was on. I was incredibly nervous the whole time. It was the worst wedding of my life— no reflection on the chasan and kallah. After two hours the volunteers brought Yocheved back to the hospital. When Yocheved walked into her room, she was happy and cheerful. The nurse on call looked at her in shock. “Something is going on,” she said. “She left here dying, and now she’s full of life!” It was true. Her fever was gone and she was feeling wonderful.
Once again the team was assembled. They figured out that the fever had been an allergic reaction to vancomycin, the antibiotic she was receiving intravenously. We had always known that Yocheved never felt well when she was getting it and did better during the short breaks between doses, but she had never had such a full-blown allergic reaction before. However, it took a few more infusions until they stopped administering the drug because the doctors were still under the impression that it was keeping her alive. They decided to discontinue it because of her severe reaction—but oddly enough, the amount of fluid around her heart continued to decrease. The doctors were both hopeful and perplexed. Then Yocheved developed an allergic reaction to another one of the antibiotics, forcing them to stop that as well. Yet she continued to improve.
Eventually the third medication was dropped, with no ill effect. And every time they checked, they found less fluid in the pericardium. Not long afterward, when the fact that Yocheved was getting better was indisputable, one of the surgeons burst into her room and said, “It’s an absolute miracle. There is no medical explanation.” He then explained exactly why her improvement was impossible. By then our daughter was off all medications and improving every day. Eventually the doctors came to the conclusion that there was no longer any reason to keep her in the hospital. At first we had to take her in for a checkup every other day, and for the next six months they cautioned us to drop everything and run at the first sign of a cough, sneeze, change in eating habits or unusual pallor. For a while we did a considerable amount of running back and forth. But today, baruch Hashem, our daughter is a ten-year-old walking, talking and thriving miracle.